Oscillopsia – The Bane of my Existence

Alright, for over a year I have been trying to describe this visual symptom that is making my life so difficult but I have never known just how to put it into words. This symptom is my worst Multiple Sclerosis symptom and I do not see it going away anytime soon so I need to really explain what it is instead of shifting between “visual issues”, “vertigo” or whatever else I have been using. I need one term to explain what I am talking about and I am settling on “oscillopsia” since that is what my neurologist says it is and that is what everything I read seems to point to.

So what exactly is Oscillopsia? Let me give you a few excerpts from Vision, Perception, and Cognition, a Manual for the Evaluation and Treatment of the Adult With Acquired Brain Injury by Barbara Zoltan. Oscillopsia is “…the sensation of the world moving” (Zoltan, 98) and “can interfere with the ability to see clearly while moving or even standing still. It can cause difficulty reading signs or identifying faces while moving or reading the dashboard while driving. It will affect postural stability and total body function…” (Zoltan, 99). “It will worsen with irregular head movements such as those that occur with ambulation. Clients may complain that objects that are far away appear to be jumping or bouncing.” Ambulation is a fancy word for being able to walk and get around. It goes on to say “Vestibular processing problems that cause blurred vision, nystagmus, oscillopsia, postural stability, and spatial disorientation can interfere with everything from reading or reaching for objects to driving and community mobility” (Zoltan, 99).

So now let me try to tell you what this is like for me. When you (MS patients) look straight up do you feel so dizzy that you want to fall? That intense feeling “in your head” is what I get when I move my head “too quickly” in any direction. If you do not have MS (or that weird looking up thing so many of us have) here is another example; when I move my head it feels like there is a g-force pulling at my head from every direction at once. In case you are not sure, g-force is that heavy feeling you get when on a roller coaster or anything that starts moving really fast like a jet; everything wants to move forward but you are pushed back into your seat. What you are feeling is g-force. The faster I move my head the stronger the “g-force”. If I tilt my head down (almost upside down) I get the extra intense feeling of looking straight up plus a little nausea. When I look back up I have some temporary vertigo. So that is what I have always meant by “it feels like I am spinning”, it is that heavy g-force feeling really. Pulling at me from every direction at once when I move my head too quickly which is really not that quick at all.

So that is how it FEELS but how does it look? This is the worst of it. Let’s say I am looking straight ahead and someone walks into the room; I turn my head to the left to see them but during that very small turn everything looks like a streak, as if I were spinning in a swivel chair with my eyes open or if I was on one of those rides at an amusement park that spins really fast. You can’t really focus on anything because it is all streaking by. All I did was move my head from the forward position to the left; that 6 inch turn was enough to set the world streaking by. And then it takes a moment (once my head is no longer moving) for everything to focus as it is blurry enough that I can not always tell who that person is. So trying to get around is difficult because just moving around the kitchen to make a meal feels like trying to cook on a bus rolling over down a hill. Everything is just a bunch of streaks.

Now you would think “well why don’t you just sit and not move?” but that doesn’t work. Even when I am lying down and staring at the ceiling, my head is perfectly still, but still things seem to be “unsteady”. I do not know how to explain this. It’s like the texture of the ceiling is slowly moving around, like when you are staring at a star unsure if it is moving or if your eyes are just playing a trick on you. I can’t say it’s moving left, right, up, down, in, out or swirling, it just somehow feels like it is not steady. Nothing is perfectly still.

When I am sitting at the computer it is actually not so bad but what has become obvious is that after I am on the computer for too long, I get up and everything is horrible. Maybe because my head was steady for so long and now it is moving around? Well, I tried doing a time limit thing, after every hour (for example) I would get up and move around for an hour. It felt like it kind of helped a bit but things would still be horrible; if 10 is horrible and 1 is perfect it would move me from 10 to 9. So basically, I will pay for sitting here and writing this. Even when I am not all that fatigued I have a hard time getting myself to want to sit and write because I know it means it will make everything worse for at least 24 hours. The longer I am on the computer the longer it will last. It makes no sense but this is how it is for me, that is all I can say. Oh, and even when I am perfectly still, I can still feel a minor sensation of that g-force pulling at my head from all directions, can’t forget to mention that feeling of discomfort.

Some days are better than others. Sometimes I feel like I can safely drive. I mean I have, around the block, just fine, but I mean drive in public. It’s been over a year and this has greatly taken away my feeling of independence. I loved driving, even on long empty roads through the desert! So I have my good days but then for no reason I will wake up and wow, it’s a bad day. It’s so unpredictable, I never know what the next day will bring. Plus, it’s been getting really hot, that doesn’t help. I almost have enough money to get that new A/C unit for my room so a nice little box full of cool air should greatly help with my symptoms since stress and heat are my two largest triggers. Yesterday my room was so warm, I felt dizzy, I couldn’t see straight, I was tired, and I had a sensation of static all across my skin! It was weird but wow, I really got off track. Oscillopsia.

There really is not a whole lot I can do but hope that time will fix this. I just started Gabapentin because I have read studies suggesting that it helps steady oscillopsia but I have my doubts… Gabapentin is nothing more than a sugar pill to me as it has never helped with anything but who knows, maybe this is the one symptom it will magically help me with. They also said up to 2mg of Clonazepam seemed to help. Well, doesn’t seem to do anything for me. Baclofen was also tested but they had no good results. I tried it anyways and nothing. So I may physically want to get up and do all this stuff but this oscillopsia BS is what holds me back. I mostly just want to be able to drive but I am waiting till things improve enough and stay stable. Not walking like a drunk would be nice too. So now you know why this is the bane of my existence haha. I am sure I could list so many examples of how oscillopsia affects my life (such as not being able to read my phone if I am walking or sitting in a moving car) but off the top of my head I can’t think of too much but you now know what you need to know when I say “my vision is horrible today”.

20 Responses to Oscillopsia – The Bane of my Existence

  1. Reina says:

    Hi Matt, thank you for sharing your experience. I recently had a case of vertigo/lightheadedness spells that were completely debilitating so I can only imagine if these symptoms were worse and constant. Dizziness as a blanket term, I feel is often dismissed by people at first, but it is one of the worst feelings and there is nothing you can do about it. I hope the Gabapentin works for you and your symptoms subside you can enjoy your long drives and meaningful activities again!

  2. […] so I tried Gabapentin for my oscillopsia, I have read studies that suggest it can help some people with oscillopsia or nystagmus. 300mg […]

  3. Bex says:

    So so true!

  4. […] feeling a bit better, I don’t have that heavy “I am sick and need to rest” feeling but the oscillopsia is still horrible. I am still pretty fatigued but it’s manageable now; worse than usual but not […]

  5. […] I felt like I had noodles for limbs; everything felt weak and ataxic. I feel really dizzy and my oscillopsia is acting up worse than usual which was already bad. I feel like I really need to get up and walk […]

  6. […] from my heat exposure… This extra sucks because it is the blurry MS vision on top of my oscillopsia! So keeping my eyes open right now really sucks… I am only writing this very short post […]

  7. […] so used to being stressed out that I can’t even tell anymore? I don’t know. Not only is the oscillopsia horrible but my vision has also been fuzzy, like, out of focus. I was also thinking yesterday that […]

  8. […] from fatigue my vision is deteriorating… Not just my dizziness (or oscillopsia) but my ability to see clearly. Everything is blurry but it’s weird, it feels “out of focus”, […]

  9. Anonymous says:

    Thank you…I learned today that once you get a severe physically debilitating episode you do not go back to baseline. I have always wondered. The dizziness and g-force is going full bore for me…I was blessed to have come across this actual name for my ‘new normal’. Dizziness and hard, hard pressure in body, arms like a straitjacket, legs want to stay still. I’ve been sitting in one position for three days sinc

    e return from six days’ hospital stay for IV steroid treatment. Keep writing, please.

  10. Best of luck with your hunt for the right thing to help with this symptom. I get the vertigo when looking up a little bit, sometimes but I can only imagine trying to live with it all the time.

    As I said, best of luck with a cure, regards from country South Australia. MS is Mega Stupid sometimes …

  11. John L says:

    Now I know what that sensation is called. I’ve been diagnosed for 18 years and now how to explain it. Keep up the good work and praying it will ease up for you soon.

  12. John says:

    I should worry more, but I don’t. I am 45 and do not have MS, as far as I know. My most frequent vision shaking issues are when I am driving and everything is slightly shaking (but fast) from side to side, with no related eye movement. I could turn and look off to the side and no shaking. Then look back in front and there it was again. Until I found this website, I just assumed I was tired, but it would happen when I was well rested. This has been happening for at least 20 years. On top of this, I have had sporadic double vision (misalignment of vision, not eyes or crossing) events and the feeling of vertigo (and your g-force description). First time was over 20 years ago when I was setting up a store and continuously looking at pegboard. Creepy feeling, but looking off fixed it. Probably 5 years until next one with others scattered 2-5 years apart. This year I have had it happen 2-3 times.
    I have discussed these with optometrist and ophthalmologist, but no major concerns by them. Optometrist is a nice guy who seems to like to research, so I will add “Oscillopsia” to his list before I go next time. I did have strabismus as a child, by the way, corrected by glasses.
    One odd thing I have run across in the last year with the shaking sensation. I recently was diagnosed with ADHD and have been taking Adderall. I have noticed that when I still have the Adderall running through my system, the shakiness almost goes away completely! It is awesome to be able to continuously focus on something straight ahead again!
    Anyway, that is about all I can really add. Probably would not work for many here, but it is helping me with the shakiness. One thing I did run across regarding ADHD is that there is some connection with it and narcolepsy. For me, even with a fresh dose of Adderall, I feel like I can just go to sleep if I want to. Maybe I have a slight form of narcolepsy, not one that just drops you to the ground, and the sleepiness is always there for me, causing the shaky vision. And if that is the case, maybe that would explain why the Adderall fixes my ADHD/self-diagnosed narcolepsy issues, which were causing the shaky vision. Who knows?
    Side comment – I got a bad case of poison ivy and received steroid shots 2 days ago and have been taking a 6-day regiment of steroids. This was prior to the misalignment issue I just had this morning. Good luck!

    • Matt Allen G says:

      Hmm, I was going to recommend an ophthalmologist but you already saw one… I am going to see a NEURO-opthamologist soon so maybe that would be good? And for me, when I take something like Ritalin or Neuvigil it gets worse! So at least you are able to take Adderall still! I would probably try to see a neurologist though, that might be a good first step.

  13. Mike says:

    I have this problem for 4 months now.
    When I look at am object or view especially in the distance it’s like a home video camera shaking, bobbing around…also I get a weird sensation like I have double vision but it’s not?

    My depth perception also seems off and things look like I’m.looking through a magnifier lens..

    I don’t really get balance problems or anything like that, just this…

    It’s making my life hell, I believe it could be toxins (CO), too much stress, or who knows??

    I had a physio telll me it was my cervical occular reflex however I’m not sure…my MRI also came back clear but with asymmetric optic nerve sheaths…

    Anyone shed any light on this, my life has stopped because of it.

  14. Mike says:

    I have this problem for 4 months now.
    When I look at am object or view especially in the distance it’s like a home video camera shaking, bobbing around…like you say when talking about lying down, also I get a weird sensation like I have double vision but it’s not?
    I get this all the time 24/7. When I’m in motion driving for example it’s not noticeable since things are already moving around.

    My depth perception also seems off and things look like I’m.looking through a magnifier lens..

    I don’t really get balance problems or anything like that, just this…

    It’s making my life hell, I believe it could be toxins (CO), too much stress, or who knows??

    I had a physio telll me it was my cervical occular reflex however I’m not sure…my MRI also came back clear but with asymmetric optic nerve sheaths…

    Anyone shed any light on this, my life has stopped because of it.

  15. Talitha Huber says:

    Wow, thank you so much for sharing your experiences. I have been experiencing the rapid back and forth jerking you described, though it doesn’t seem affected by my own movements, so it’s not quite the same. I appreciate finding someone who describes it so well and knowing I’m not crazy and imagining the sensation at all.
    I will definitely be going to the doctor armed with the information you supplied and can hopefully find out if this oscillopsia is a symptom of something more serious.
    I pray you find some relief with these new medications and that your good days become more frequent!

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